Emotional Toll, a NICU Story (by Mom)

  Although I try to keep this blog very factual, but with a positive spin, we will now be writing what we remember about all of the emotions and how we were affected, as parents, during Emma's 323 days in the NICU/PICU (from June 12, 2017 to April 30, 2018).

Written by Rachel:
   Since Emma has been home from the NICU herself, one of her nurses (Billie) contacted me twice asking if a mom, whose child was currently in the NICU for several months, could reach out to me for emotional support and questions with how we got through each day. Of course I said yes. But since neither of those people reached out, I figured maybe Billie could send them this blog post with a lot less positive, but very rough and real, details than the rest of the blog has. It is totally fine that they didn't contact me because, while we were in the NICU with Emma, I felt like it would be easier and more comforting to talk to someone whose child was still in the NICU like ours, rather than thinking, "Well that's easy for you to say because your baby is home now and doing so much better." At one point one of her respiratory therapists (Gary) asked if we wanted to talk to a family whose child was in the NICU even longer than Emma, 18 months!! I felt bad complaining about her 9 months in at the time, however, we also never talked to that family. After a total of 10 1/2 months, I think Emma holds the unfortunate record for second longest NICU stay at Winnie Palmer in Orlando, Florida. We later met a mom who said her son had an autoimmune disease and was in the hospital for the first SEVEN years of his life (but is in his 30's now and doing well)!!
   I cried a lot the first few months, starting in May 2017 when I was 31 weeks pregnant, but Emma was only measuring the size of a 26 week old. I cried on the way to the hospital where I ended up having to stay for six days as they monitored her with many tests and an amniocentesis. I wondering what was wrong, why wasn't she growing properly, picturing a tiny Baby Emma falling out of the sky for some reason (and this was after also having a miscarriage in April 2016).
   I cried a TON on May 18th at an appointment with the Maternal Fetal Medicine doctor when he felt pretty sure, after a really long ultrasound, that Emma had a type of fatal dwarfism called Thanatophoric Dysplasia. He told me several times (too many times) that her body was "not compatible with life". And if it wasn't immediately fatal, she probably wouldn't live longer than five days. Luckily we found out the next day from a Pedicatric Cardiologist that he was most likely wrong, which he was.
   I cried when she was born, as her little 3 pound body was pulled out of my abdomen via C-Section, since she wasn't crying, except for a very short "Eh" noise. Although her eyes were open a few minutes later, when Michael showed me the first clear picture of her, I cried again, asking, "What's wrong with her legs?" One of them looked like it was completely backwards, luckily it wasn't but she does have Genu-Recurvatum (backward bending knees, like a bird!) He told me recently that it looked like it took them a couple minutes to get her to breathe on her own. I have no clue how she was able to breathe for those few minutes as I held her on my chest with only the oxygen cannula in her tiny piggy nose. If she needed so much medical support to stay alive for the rest of the time, how was it possible for her to be doing "fine" at the beginning? Actually, I do know how.
    IT WAS GOD.

   I cried four days later when we went home from the hospital, but couldn't bring Emma home with us. "She's supposed to be here with us!" I exclaimed in the bedroom, although I seemed okay on the drive home.
   Two days later, I cried in the middle of dinner when Michael and I went to a restaurant for Father's Day, just thinking about her chubby cheeks and all those wires and tubes attached to her.
   I cried when I went back to work three weeks after Emma was born, while still recovering from my C-Section. After being put on bed rest since May, I needed to preserve the last 4 weeks of my medical leave time for when Emma could come home from the NICU, wrongly assuming it wouldn't be more than another month. One of my sweet co-workers (Denise) quietly asked me if I was okay, since I had been sitting at my desk, looking very sad. Once she asked, the tears came pouring out and I too-loudly told her she can't ask me that. I apologized later. She told me that her daughter had also been in the NICU for two months. That made me feel better.. until Emma had been in the NICU for longer than two months. And then another month, then one more month, sometimes with things seemingly only getting worse, with no planned future of coming home.
   When I went back to work I realized that I wouldn't get to see Emma every day anymore. I work 12 hour shifts, and with also having to pump milk often for her (which I did for the first five months until she was put on a special soy formula called EleCare), I knew I wouldn't get enough sleep if I continued to make the drive to the NICU every night after work, especially since I had to wake up in the middle of the night to pump at 1:30 and again at 4:50 before work. As an example- if it was a day I worked (Monday) and I also worked the following day, then I would not see her on Monday night, but could see her on Tuesday night since I would be off on Wednesday and could sleep in.
   However, there were some days where even though I had to work the next day, my need to see my baby, even for 10 minutes, to give her a kiss or read her a poem I wrote, was more important than getting a decent amount of sleep that night. Unfortunately my lack of sleep piled up and also took a toll on our marriage, mostly in August and September, from what I remember.
    At the end of July, a respiratory therapist (Errica) overheard me getting very excited and telling Emma that she could come home a couple weeks after she gets her trach put in, since that was what the ENT doctor told Michael on the phone that morning. Errica hesitantly but quickly said, "I don't know why he would have told you that, but please don't think Emma will be going home any time soon." I cried a TON right then too. I knew she was only telling me true information that I needed, but I wanted my baby home. I had a plan and Emma being in the hospital for a million years was not part of that.. Well, Welcome to Holland! (Definitely read that poem/ short essay, by Emily Perl Kingsley, if you haven't heard of it before.)
   In August, I cried and looked away the first time I saw her pass out. As she turned purple and closed her eyes while I held her in my arms. There were two nurses there who knew what to do and told me when she was awake again. Emma smiled at me, but one of the nurses (Lori) told me that I should get used to seeing that, and learn what to do, because it will probably happen a lot. And it did.
   I cried on the phone when I called for a nighttime update and the nurse told me that Michael and I should think about arrangements incase Emma doesn't make it (since she had been passing out up to ten times a day, due to her severe tracheobronchomalacia/ floppy airway). I didn't want to think about that! I was trying to stay positive! It made me worry that the nurse wouldn't take care of Emma as best as she could if she figured Emma was going to die anyway. I'm sure that isn't true, but it's how I felt at the time. We later asked for her to not be one of Emma's nurses unless absolutely necessary, due to a scheduling conflict, etc.
    I cried on her 5 month "birthday", as I drove to the hospital after work (although I was listening to a sadder song on repeat, "Jar of Hearts" cover by Lea Michele), the fact that she was still in the hospital.
   I remember feeling really bad and guilty one day because I just didn't have the energy to go to the hospital, even though it was my day off. It made me feel like a terrible mom. I called Michael about it, but he said it was perfectly fine if I didn't see her that day, although I think he really did see her every single day, except for a week in October when he was sick. I didn't have the energy that day to drive through that hectic parking garage (it's a miracle we never got hit or hit someone else in those tight quarters, winding up three or four floors, depending on the time of day), going through security, waiting in line to get our visitor sticker (which was particularly annoying when the employee at the desk didn't recognize us and politely asked if we had been there before. "Yes! My baby has been here for 6 months! I come here almost every day! How do you not recognize me by now!?" That's what I yelled inside my head, but only ever sighed and said, "Yes, Rachel Gore."), to find that Emma was not having a good day medically or she would be sleeping, so I couldn't hold her or play with her anyway. And then I cried about not being able to hold her.

   Another thing that was hard was not knowing what type of dwarfism Emma had the first six months of her life, something they had been trying to figure out since May. Dwarfisms have different life expectancies depending on the type, so of course we wanted to know what to expect. One of her main doctors thought it was maybe Larsen Syndrome, but that was not correct. Insurance wouldn't allow the genetic test until she was out-patient, and even then, it would have cost us over $5,000 to find out because insurance wouldn't cover it. So we figured we would never know, which was unsettling considering we had talked to two different geneticists at Winnie Palmer. It just seemed that the doctors didn't know much at all about babies with dwarfism, which, to me, made it feel like Emma was a guinea pig. She was so rare that they just tried a little bit of everything, or did what they could to get her through each day, unable to find a solution for her "passing out problem". We thought maybe it was seizures, but they ruled that out.
   At work it was sometimes hard to be positive, or my positivity became confused, if a co-worker from another department (someone I didn't talk to every day) would ask how Emma was doing, and I would say, "She's doing great!", because she hadn't passed out in a few days, and they would immediately smile and ask, "So she's coming home soon?" Then my heart would sink. No, she's not doing that great.. It was also frustrating being in the elevator to get to the NICU and hearing a woman talking on the phone, "Can you believe how long Tiffany and Brad's baby was in the NICU? I know.. Nine days! I can't imagine their suffering." (Or three weeks.. Michael and I heard both and just rolled our eyes at each other.)
   Sometimes I felt like I wasn't a real mom, I was just a "hospital mom", someone who only got to see their baby for 30 minutes a day, and not even every day. I usually stayed for a few hours on my days off from work, but still had to do regular adult things like running errands, getting groceries, and I wanted to go for walks in the evenings to lose my baby weight. I heard the devil whispering lies into my ear, telling me I was a bad mom when I found it hard to hold Emma with all the cords/tubing, or she wouldn't seem comfortable enough to fall asleep in my arms.
   One of my very favorite medical days, was when I got the call saying we were all going to CS Mott Children's Hospital in Ann Arbor, Michigan! I literally danced in the hallway at work that morning. Going to Michigan meant finally getting a solution to all of Emma's "passing out spells" because Doctor Green and Doctor Hollister had invented 3D splints to help kids just like Emma that would keep their airways open. However, I cried the following night when we got there and Emma was desatting, but the male nurse, who obviously didn't know anything about Emma since she was a brand new patient to their hospital, wouldn't let me change Emma's diaper even though I knew that would help her oxygen saturation levels go back up. When he saw me crying, he let me change her diaper, and then she was content again. He quietly told me, "I'll add that to her notes."
   I cried the morning of her surgery (December 27, 2017) as the devil whispered in my ear again as we walked down the long PICU hallway to her room. "Don't forget to say goodbye. This might be the last time you see her alive." It was not!
   I cried in January when Dr. Green told us that, although her airway surgery had been successful, she still had a less than 50% chance of survival because of the fistulas (tiny rips in her "tissue paper thin" windpipe, caused by the necessary act of sewing in the 3D splints) and that her right lung had collapsed twice due to air filling her chest instead of going into her lungs. If the air surrounded and put pressure on her heart, she could die. And then he said if they did another surgery to try to cover the fistulas, using part of her esophagus tissue, and Emma survived, she still only had a 20% chance of life after that. Our nurse that day (Sara) was standing near by and also cried for us.
   I was so happy when Emma was doing well enough mid-February that Dr. Green gave us the okay to fly back to Winnie Palmer. However, I cried a TON again at home when she was hooked back on to their "Cadillac" ventilator, but was having a very hard time breathing/ almost gasping for air for 40 hours, before we begged them to switch her over to the home "Honda" ventilator (LTV 1200).

   So although it was a really rough year, here are some things that did help ease the pain and make some days pretty good compared to others, at least for me, as I'm trying to only write this from my point of view ~ Michael will write his own perspective in the next post.
   >> I tried to remember how lucky we still were, even if it didn't seem that way from the outside. Our baby had gone through so much and thrived when science showed it wasn't possible. I told myself we were lucky as I sat across from another mom whose one year old baby had brain damage and she had to make the decision to let her daughter go. I felt bad laughing about something cute Emma did when that mom was in the room. We were lucky that with each new sunrise Emma took another breath (via ventilator), while on the other side of the room, a whole family was praying over their baby boy's incubator. We were even told by the nurses to be extra quiet and respectful that day because that family's baby was going to pass, and he did. We were lucky because even though our NICU stay was so long, it was not as long as others' around the world, and those were days that we still had a child, when we were told that she would never make it home with us at all (the likely stillbirth comment).
   >> Having favorite staff members helped a lot. A huge thank you goes to Billie, Kim, Lori, Julie, Mallorie, Gary, Sunny, Krista, Jenna, Kori, Karen, Maureen, and Victoria from Winnie Palmer. As well as Bridget, Courtney, Sara, DeSharra, Stacey, and Alexis in Michigan, along with so many others!) Having a friendly person to talk to and chat with, people who genuinely cared about Emma, and also having "real life"/non-medical conversations helped us not feel so alone. The first time we met Billie I immediately liked her because she picked up my phone and started taking family photos of us without me needing to ask!! There also were a few front desk people who did remember us, and they would have our visitor sticker already printed out for us when we walked up. It may have felt like a small gesture to them, but really made a huge impact on us.
   >> Once Michael and I were able to plan "Family Time" (days where Michael would meet me after work and we would do Emma's bath & trach care together), that made our marriage better. In July and August it was hard seeing her separately and barely seeing each other because I felt like a single NICU parent. Practicing "regular" care for our daughter together was really nice.
   >> My work supervisor saying I am a great employee made me feel nice, acknowledging how I showed up to work every day when I could have easily called out sick to spend another day with Emma or just not gone to work at all. I loved that she was (and still is) so understanding when I need a last minute medical leave day off (like I did for NICU Christmas photos in 2017 and Emma getting a last minute CT scan the same day, or now if a doctor appointment can't be scheduled for a day I have off- that's only happened one time though).

  >> EASE updates that were sent from the nurses during the day- and at night- were so amazing to get and I would always look forward to them. It was something we signed up for with the EASE app, so I know not every hospital has that, but I was so glad that Winnie Palmer did! Maybe if your child's hospital doesn't have that you, could give the primary nurses your phone number and ask them to send pictures when possible, especially if you also have to work or take care of other kids at home. I also enjoyed getting pictures from Michael since he worked 9-5 and had more time to see Emma in the evenings. He still got the same amount of sleep whether he saw her after work or not. 

  >> I tried to think about what my mom told me once, when I complained about all the surgeries and PICC line placements/ blood draws Emma had to get, how it must be hurting her little body. She said, "At least she won't remember any of this." Although I am wondering what age she will be before she asks to see baby pictures of herself or if one day she will read through this whole blog and Baby Emma will inspire her future self!?

  >> Michigan, although also an emotional and medical roller coaster, was overall a great trip for us. I later referred to is as "a medical vacation". Since Emma was in the PICU, the rooms were bigger and she had a TV, so we were able to watch shows we liked on HGTV and TLC to pass the time, as well as Disney movies when she was awake and able to sit up in her therapy chair. It was nice getting to be so close to her (we were able to stay in the Ronald McDonald House across the street), and spending as much time as we wanted in her room, usually about 12 hours, from 10am-10pm. When Emma had good days, or in most of January when she had to be put on sedation and paralytics to help her fistulas heal and we weren't allowed to hold her, we explored Downtown Ann Arbor. It was also nice not having to work and drive 30 minutes to get to her and back, or worry about a parking garage. (The Mott Hospital did have a parking fee, so it was great not having to pay that. We just used an Uber the few times we needed to go anywhere farther than comfortable walking distance- this was winter too, mind you, and there was snow on the ground almost every day.) The hospital had security walking around, but not a metal detector that we had to walk through or get my purse checked every day, and they gave us month long badges, so we only had to stop at the front desk on December 11th when we arrived, and then January 11th and February 11th to get our badge dates updated for another 30 days.
   Christmas in the hospital was so much nicer than I would have imagined, which of course made me wonder what Christmas at Winnie Palmer would have been like. I was happy we were in Michigan for the holidays though, our first White Christmas. Also with Michael and I having so much time to spend together, our marriage was seriously the best it has probably ever been. We have a lot of good times together, but those months were top notch!!
  >> Having friends and family meet Emma in the NICU was fun. I loved getting to show her off, especially when she was having a good day. Every mom wants to have a bunch of get-togethers saying, "Come see my super precious baby who is definitely the cutest and most wonderful baby that has ever walked the earth!" My parents met her on the Saturday after she was born and Michael's parents came down in July.
  >> Doing "normal" things like celebrating holidays- decorating her crib area with Halloween garland or Easter eggs and putting tiny outfits on her and taking pictures was something I looked forward to, and took advantage with 3 different "costumes" in October 2017. The nurses were helpful and never minded taking lots of photos for me as long as they weren't busy helping another baby. When we were in Michigan the nurse even said I could fill up a bucket with snow from outside and bring it to Emma's room so she could feel it and hold a tiny snowball for the first time. The nurses often made holiday cards for us, using her footprints as different shapes, like turkeys or witches.
  >> Michael being positive really helped me be positive too. We still laughed a lot, which the staff always encouraged. I can't imagine how much harder everything would have been if I had a husband who was pessimistic or who worried as much as I do, or no husband at all! He did have his bad/sad days and usually we evened out, so if he was feeling bummed about everything (which he was for a few days in Michigan, and it was so nice that one of the Fellows --the one who looked like Matt Damon!-- took notice to his attitude change and sat down to ask him about it), I would somehow be in a good mood trying to cheer him up.

  There is no secret answer of how to get through a difficult time like this. To be honest, if a friend of mine went through this and Emma had been perfectly healthy, I would have thought, "There is no way I would have been able to be as strong as that mom." But it was our situation, and we made it through. Emma still has her trach and ventilator and everything, so we'll probably never be normal, which is perfectly fine with us, especially with her Meier-Gorlin Syndrome diagnosis, a type of Primordial Dwarfism (which we officially got, and her tests came back positive for it, while in Michigan due to them having lots of grants, so we didn't have to pay for that!! She has a full life expectancy.)
  Be together as much as possible, but also make sure to take care of yourself --stay hydrated, sleep as much as you can, get some sun, and eat well. Try to stay positive and hold onto every good thing that happens, even if it's something small, like "My baby held my finger and smiled at me today." Pray a whole lot, including thank you prayers. Or make a wish and blow dandelions into the sky, if that's what you prefer. Continue showing up, keep pressing on, even when it's hard, and do the best you can! "Take it one day at a time", and all the other cliche lines out there, because sometimes that is really all we can do when we are not in control.

"You never know how strong you are, until being strong is your only choice." -Bob Marley

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(Photos below from September/ October 2018.)